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Cystic Fibrosis (pregnancy) (policy currently under review)

The UK NSC policy on Cystic fibrosis screening in pregnancy

More Information

Cystic Fibrosis (CF) was recognised as a specific entity by Dorothy Andersen of New York in 1938. The condition is characterised by early onset of severe intestinal malabsorption, failure to thrive and recurrent chest infections and pneumonia which, if untreated, leads to death from malnutrition and respiratory failure in infancy or early childhood. Due to improved treatment, particularly with antibiotics and better pancreatic enzyme replacement therapy, average survival has steadily improved to around 37 years.

» Read more about cystic fibrosis on the Contact a Family website

Policy Position

Screening should not be offered to pregnant women.

This policy is currently being reviewed as part of the UK NSC's regular review cycle of all policies.

The review process began in Jan 2010 and is estimated to be completed by Mar 2012.

Evidence Supporting the Policy

The 1999 Health Technology Assessment (HTA) report on the condition did recommend universal antenatal screening (below). After consideration by the UK NSC, however, there are no plans to implement screening for cystic fibrosis.

Health Technology Assessment 1999, vol 3, no. 8: Screening for Cystic Fibrosis

Stakeholders

Cystic Fibrosis Trust
Genetic Alliance UK
Institute of Child Health
PHG Foundation
Royal College of General Practitioners
Royal College of Midwives
Royal College of Obstetricians and Gynaecologists
Wolfson Institute of Preventive Medicine

The stakeholder groups will be involved when the policy is next reviewed. If you think your organisation should be added, please contact us.

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